Finding HopeThe Consequences of an Autism Diagnosis
Posted on March 27, 2018
During my attempts to get a diagnosis, I had many people giving me their thoughts on finding a label and that only increased when we started pursuing an Autism diagnosis. It was almost as bad as the amount of people telling me to have a bath or go for a walk to help my depression. Everyone had an opinion on it and the majority of people were, at best, wary and, at worst, completely against it. But I knew I needed a diagnosis – an explanation – for why I was struggling and now, two and half years after my diagnosis, it’s clear that it was the right move for me. I’m not holding it against those people because they were only trying to look out for me but it did add to the stress of the situation so I thought I’d write out some of the positives and negatives that I’ve experienced around my diagnosis.
POSITIVES
AN UNDERSTANDING OF WHY I WAS STRUGGLING – Before my diagnosis, I was very aware that something was causing me to struggle and I needed to know where that was coming from. I could see that I functioned differently and, until I had an explanation, that was because I was broken. That was how it felt. If a doctor told me it was something – something that had been researched, had a name, something that other people had – then it was something that I could do something about. But if it went unnamed and uncategorised, it was because there was something wrong with me. So, to learn it was Autism, was actually quite a relief. Rather than being an intangible black cloud that was swallowing my life, it had boundaries and patterns and strategies to work with. That was massively helpful to me.
A VALIDATION OF MY STRUGGLING – Before my diagnosis, I was consistently dismissed by doctors and other medical professionals when I tried to get help. If I mentioned anxiety, I was told that, ‘everyone gets anxious.’ If I felt that I absolutely couldn’t do something because something in my body was screaming not to, I just had to pull myself together. If I talked about my debilitating fatigue, I essentially got a shrug of the shoulders. Now at least people listen. They don’t always have the answers I want – sometimes they don’t have answers at all – but I’m no longer being dismissed.
MAKING SENSE OF WHO I AM – The things I had been struggling with were taking over my life and, without knowing what caused it, that made me feel very lost. I struggle with identity stuff anyway but when all my thought and energy was being devoted to these problems, there wasn’t the space for anything else. With the Autism diagnosis, things became much more straightforward. Of course this may be different for other people but for me, I could put the Autism in a box in my brain and that allowed me to see what was there. I started to get more of a sense of who I was and who I wasn’t. There are differing opinions of whether you should define yourself by your Autism but it’s a massive part of my identity; looking back, I’m surprised I didn’t feel more lost.
ACCESS TO SUPPORT – Having an Autism diagnosis made it possible to get support, emotionally and financially. I’ve been able to get benefits, extra time on exams, flexibility in the arrangement of events, and so on. This has been so helpful and I’m so grateful for it. Of course I managed before but these things have made a great impact on my stress levels and have therefore made it possible for me to be more functional and more productive. And I’ve been able to enjoy myself where, before, I would’ve been paralysed by anxiety. None of that would’ve been possible without a diagnosis.
AN EXPLANATION FOR UNUSUAL BEHAVIOUR – Having ‘Autism’ as an explanation when people ask why I’m doing something a particular way or why I can’t eat a certain thing makes people a lot more accepting. While many people don’t understand Autism in detail, they do know that it can involve behaviours like these. For example, my family are much more patient with my food sensitivities than they were before the diagnosis because now they know where it comes from; they understood that I wasn’t being picky by choice, but because I was autistic. The focus has changed from putting myself through those tough experiences in the hope they’ll get easier to finding ways to help me manage them.
A CONNECTION TO OTHER PEOPLE WHO EXPERIENCE THE WORLD IN A SIMLIAR WAY TO ME – This is something I’ve only started exploring recently. For a long time, I needed to figure out how to be autistic, if that makes sense. I had to work out how to live with it, and adding more people into the equation was a bit too much to cope with. But now that I feel more together (at least in terms of the Autism), I’ve joined a group so that I can meet more people like me, i.e. similar age, gender, and diagnosis. This isn’t something that would’ve been possible without the diagnosis. And even though it’s so new, it has been really exciting. I’ve made some new friends and we’re having a lot of ‘oh my god, me too!’ moments which is surreal and wonderful and funny. Hopefully this is only the beginning of something.
BENEFITS TO MY MENTAL HEALTH – I cannot express how important it was to me to have my feelings and struggles validated, as they were when I finally got the diagnosis. Being believed was life changing. One of the theories as to why I developed Borderline Personality Disorder involves the continued invalidation I went through while trying to get answers for myself. I also had a lot of anxiety around the continued not knowing and I was severely depressed. Getting a diagnosis didn’t magically make things better but it was a huge weight off my mind. And it was movement; even if moving forward is scary, staying still is worse.
NEGATIVES
FEELING THAT THIS IS FOREVER – Pre diagnosis, there were many theories as to why I felt the way I did. But while I’d repeatedly flipped through those in my mind, I’d never really thought about what would happen after I got my answers. So while getting the Autism diagnosis was a huge relief and a generally positive milestone, I was still very thrown by all these other things that I hadn’t considered, and one of them was that Autism is a lifelong thing that I will have to deal with. When we thought it was depression for example, there was an end to it, the opportunity to recover. I know intellectually that although I won’t ‘recover’ from Autism and I will learn how to manage the difficulties, it did and still can make me feel very claustrophobic within my own mind. As irrational as it sounds, I’ve had moments where I’ve felt like, if I just tried harder, I would be able to break out of this ‘Autism prison.’ I swing back and forth on this feeling but, as you can probably tell, the positives of getting the diagnosis far outweighed the negatives for me.
I want to be clear that these positives and negatives are just from my experience. I know that many people have experienced stigma and have been badly treated because of their Autism but I don’t think I’m qualified to speak to those experiences. I don’t know what that feels like and I don’t want to speak for those people. So this is my experience. Hopefully it can be helpful.
When You Feel ‘Too Much’
Posted on February 10, 2018
As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).
Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.
Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.
Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.
Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.
Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.
Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.
Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.
It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.
Stepping Back in Time
Posted on February 3, 2018
Sometimes I wonder about what it would be like if I could go back to secondary school and to sixth form but with everything I know now. Obviously it would help with the lessons and exams but what I’ve learned about myself would’ve completely changed my experience of school. I’m such a different person at twenty-three than I was at sixteen or eighteen (as I would hope we all are). Throw in the ups and downs of my mental health and I’d say I’ve learned a lot in those years. I’ve been thinking about this on and off for a while now so I thought I’d write down some of these thoughts and compile them here:
On Choosing Subjects To Study – I am fascinated by what my life would look like if I’d known I was Autistic, if I’d known about my mental health challenges, and this is a good example of that. Because of the identity issues that often come with BPD, choosing the subjects to study at sixth form was distressing. How was I supposed to know what I wanted to study when I didn’t know who I wanted to be, who I was even? I want to write about identity a lot more but it’s such a big subject that I haven’t managed to tackle it yet. I promise I will. In this case, I knew I liked Psychology and I knew I liked Maths but I wasn’t sure what to pick for the final two options so I did what I always do when faced with a question about myself that I don’t know how to answer: I filled the empty space with real people and fictional characters that I liked and admired, people that embodied the things I wanted to be. That was how I ended up choosing History and Physics. I don’t regret those choices but now that I know that that happens, I approach things differently.
On Standing Up For Myself – I was fortunate not to go through any extended periods of bullying during my school years. There were a couple of incidents but they never went on for very long; they either got bored of me ignoring them or I pushed back which made them stop. But I had several teachers who didn’t behave particularly well: shouting at the class, humiliating us, telling us we were stupid, etc. Back then, I just kept my head down; I didn’t want to draw any attention to myself. I was terrified of getting in trouble and standing up to an authority figure was something I just didn’t know how to do. I was just trying to get through it; I didn’t know that I didn’t deserve to be treated like that, that I could push back against it. Were I in that situation now, I wouldn’t let someone treat me that way, let alone anyone else. If it wasn’t abusive, it was a downright unacceptable way to treat the children they were responsible for.
On Trying To Fit In – When I was younger, especially in my early teenage years, I would look at the girls in my classes and in my year group and wish that I could be one of them. They were all so pretty and seemed to have everything and had been friends all their lives. I’d missed a lot of school due to illness and there was some hard stuff going on at home and my one good friend had just moved to the US. I felt very alone. I wanted to belong somewhere. I went on to find some amazing friends – many of whom I’m still friends with now – but the feeling of belonging is a hard one and one that I guess I’m still learning how to handle. But if I was going to secondary school all over again, that isn’t something I’d worry about. I think that the need to belong isn’t so urgent when you feel like you belong to yourself. I’m not all the way there yet, but further down that road than I was at sixteen.
On Blending In – It wasn’t until I looked back that I realised I was trying to be invisible. I didn’t put my hand up when I knew the answer, I hated any activity that required me to be at the front of the class, and I did everything I could to avoid drawing attention to myself. Even the way I sat – hunched over, trying to make myself smaller – reflected that. And yet I was desperate not to be forgotten. Apparently teenage me was an oxymoron. But no, I get it: I didn’t know who I was and I didn’t want people to know me, or remember me, as something I wasn’t. And worse case scenario, I embarrass myself and that be what people associate with me forever. But as I started to know myself, this behaviour started to change. Finding something that I loved and something that made me feel like I was where I was supposed to be, i.e. songwriting, really helped with that too. In a way, finding that gave me permission to exist, to take up space, and that gave me confidence. These days, I can look at myself and feel so unsure about everything but all I have to do is look back to know how far I’ve come.
The last couple of weeks have been hard, mental health and medication wise, but I’m hopeful that that will start to ease and then I can spend more time and energy on here. Thank you, as always, for reading.
Finding Hope 